Rachel asked the government to implement routine genetic testing, in cases where a deceased person is under 20 years old and cause of death is unclear. The ‘Coroners Project’ campaign was established by Danielle Green and her husband Leon, who tragically lost their two young children to a rare genetic mutation.
Tuesday the 9th of September 2025,
Victorian Legislative Council
Rachel Payne (South-Eastern Metropolitan):
My question is for the Minister for Health, represented in this place by the Minister for Mental Health. The loss of a child is an immeasurable pain, particularly when it cannot be explained. The Coroners Project is a campaign for genetic testing to be a routine part of coroners’ investigations for those aged 20 or under where a cause of death is unclear.
Danielle and Leon Green’s child Sonny passed away from an unexplained cause when he was just nine months old. Danielle and Leon went through the terrifying process of another pregnancy. They had a little girl named Airlie, but at 12 months old she too passed away. Genetic testing later revealed both children had a rare genetic condition.
My question is: will the minister include routine genetic testing for coronial investigations in unexplained deaths of young people?
Ingrid Stitt (Western Metropolitan – Minister for Mental Health, Minister for Ageing, Minister for Multicultural Affairs):
I thank Ms Payne for her question. That sounds like an absolutely heartbreaking example that you have given. I will ask the health minister to provide you with a written response in accordance with the standing orders.
Rachel Payne:
I thank the minister for referring that on. By way of supplementary, the Royal College of Pathologists of Australasia guidelines emphasise the importance of genetic testing only where certain criteria are fulfilled, like a family history of a condition. This means genetic testing is rarely performed, as the vast majority of children with a genetic condition have no family history.
Will the minister advocate for changes to these guidelines?
Ingrid Stitt:
I will also pass on Ms Payne’s supplementary question to the Minister for Health in the other place.
Written response, received 11th of September, 2025:
The death of a child is always a tragedy.
Ongoing advances in genetics have the potential to avoid suffering and the Victorian Government is committed to supporting high quality genetic services, this includes through the Genetic and genomic healthcare for Victoria framework launched in 2021 and the expanded newborn bloodspot screening program, available to all babies in Victoria which includes testing for spinal muscular atrophy (SMA) and severe combined immunodeficiency (SCID).
The Department of Health provides funding for public genetic services in Victoria through metropolitan hubs and Victorian Clinical Genetics Services. This includes children and adults and covers hereditary and non-inherited conditions.
The Genetic Support Network of Victoria (GSNV) is a community resource for patients affected by genetic conditions and their families. Patients who undergo genetic testing are supported by genetic counsellors in the Victorian public health system.
The Hon Mary-Anne Thomas MP
Minister for Health
Minister for Ambulance Services
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